Facet Joint Injections in the Lumbar Spine

Facet Joint Injections in the Lumbar Spine

I have pain all over the place, but ranking at the top of the list is my lower back.  I’d previously had facet joint injections in my neck and shoulders some years ago, but they didn’t help.  However, it was before I’d had an MRI (as it took around 8 years of arguing to get one) and so the consultant was ‘guessing’ at what the issues were.  Later on the MRI did clearly show an area in my lower back that had degenerative lumbar disease in the facet joints, arthritis, and others issues.  It made a much better target for injections than anywhere else, so I thought it was worth a try.

It took another few years of me arguing for them (nothing ever just seems to just happen on the NHS!) After getting nowhere locally, my Ehlers-Danlos specialist at the Royal National Orthopaedic Hospital at Stanmore sent me to see her Pain Management college, who gave me the go-ahead for bilateral lumbar facet joints at L4/L5 and L5/S1 (so four in total).

A few days passed after being told I could have them and suddenly I thought – what the hell am I doing fighting to have needles put into my spine?!  I was sedated during my previous injections, but I did have some memories of the procedure.  I remember my consciousness kind of returning and thinking ‘please stop now.’  I was later told the sedation didn’t actually knock you out, but simply wiped your memory – and that you would be aware of what was happening as they did it.  This memory built up in my mind until I was convinced I’d be strapped down with horrible painful injections into the middle of my spine, then I’d just forget afterwards so I didn’t realise how awful it would be.  So I was about 500 times more nervous for these injections than previously.

The whole topic became a ‘do not discuss’ subject.  As soon as I thought about it I went into a state of panic, so there was no research done as I normally would, and I didn’t even allow my mum (who accompanied me) to talk about our arrangements of getting there until the day before.  I just wanted to block it totally from my mind.

We travelled to Stanmore the day before for two reasons.  The first that I can’t make the journey there and back in one day, and the second was that my admission time was 7am.  Ugh!

Although I wasn’t having general anaesthetic, I was told not eat after midnight, and no drinking after 6am.  It was the latter I’d struggle with as I’m constantly thirsty.

I arrived at the hospital a couple of minutes before 7am and had a choice of parking for the first time ever!  When we reached admissions there were a few people waiting outside, but when the queue got the doorway I realised the room was packed with both people queuing, and waiting in the chairs.  It wasn’t the easiest getting my wheelchair in and out with no room for manoeuvring.  There was only one member of staff dealing with everyone.  The older lady in front of me didn’t speak any English, and was soon joined by an interpreter.  The staff member made a phone call and I heard him say, “Are the wards still closed, there are a lot of patients here?”  He then informed the interpreter they had a bit of a wait ahead. I was next, and was told the same thing.

I was a little cross, only because getting somewhere for 7am isn’t very easy for me and more importantly 7am = grumpiness!  I did later found out the wards were opening for the first time after being closed for two weeks over Christmas – so I assume the delay isn’t normal.

I reached the ward and was met with a number of friendly nurses and health care assistants who welcomed me, and showed me my bed.  The lady with the interpreter was in the bed opposite me.  A nurse admitted me with a huge pile of paperwork, most of which seemed irrelevant in my case!  I was asked a couple of times if I had any allergies.  She then took swabs for MRSA and then took my blood pressure (which I hate, as it’s very painful.  The muscles in my upper arm are very tight and particularly sensitive).  I was told I was third in the queue – and the doctor would be seeing me beforehand.

A couple of other patients got in the bed and went to sleep, which seemed like a good idea – and would also make the time pass.  However every time I was about to drift off I was woken by someone.  The first to measure me for pressure stockings, then again to tell me I didn’t need them.  Then a doctor who was working with my consultant arrived to explain the procedure.  I was glad it was her and not my consultant as she was much warmer than my consultant is, which helped.  She spent a lot of time explaining how much time they took to sterilise everything to reduce any chance of infection.  I wanted to rudely interrupt and say that at that point, I didn’t care – I just wanted her to promise she’d knock me out!  She then went through the possible risks – infection, numbness in the legs, pain flaring up afterwards and in a very tiny amount of cases nerve damage.  She asked if I had any allergies.

Finally I could ask the one thing I wanted to know.

“You will be sedating me, right?”

“Did you ask for it before?”

“Yes,” I emphasised.

“Then we will.”

“Will I know what’s happening?”

“Well, some people do sleep.”

“Please make that happen with me.  Please.”

Then the pharmacist came to take note of my list of medications, and asked whether I had any allergies, then a number of nurses came to tell me, “It won’t be much longer.”  Then that they were on their way for me, only to still be there sometime later!

Eventually the porters did arrive and wheeled me into theatre.  A nurse went through the final questions – checking I knew what procedure I was having, if I’d had any before, if I had any allergies and if it was definitely my signature on the consent form.  The nice doctor then fitted the cannula into my hand, before I lay down front-first on the table.  They put an oxygen mask on me, a clip onto my finger to measure oxygen (I’m sure that has a proper name) then to my annoyance – a blood pressure cuff which I was told would be taking my blood pressure every few minutes.  It took it twice, before I told the nurse how painful it was.  “No problem,” she told me cheerfully, and moved it onto my leg instead which was much better.  She then began chatting to me about my hobbies and jewellery making, before my consultant began putting the sanitising fluids on my back.  The nice doctor then began to input two injections of sedation into the cannula. I closed my eyes – trying to relax.  She then asked if I could still hear her, and I said yes.  She thought I’d gone to sleep, and I said I hadn’t felt any sedation yet.  She said she’d keep going, and added two more tubes.

The next thing I remember is feeling a bit of pain in my back, and a nurse telling me it was all over.  I definitely hadn’t been aware of it.  I was taken into recovery for awhile, still very sleepy and groggy.  A nurse chatted to me for awhile, and I remember telling her to say thank you to the nurses, as they’d calmed me down a lot beforehand.  She promised she would.  She then asked if I knew which ward I’d been in.

“It began with J…” I answered.

“Jackson Burrows is the only ward beginning with J.”

“No, it wasn’t that.  Was it Diane something?”

“I guess now wasn’t the best time to test your memory?” she laughed.  She then came back and said that unfortunately they’d moved me to Margaret Harte Ward.  I began to worry if anyone had told my mum as I knew she was planning on getting a cup of tea while I was in the theatre (as she’d very kindly not eaten/drunk anything in front of me while I couldn’t).

As the porters wheeled me out of recovery, the nurse suddenly called for them to stop.  She dug through a cupboard, and pulled out another blanket to put around me.  “Sorry,” she said to the porters. “I just didn’t want her to get cold on the way back.”

When we got back to the ward I spotted my mum very quickly and realised it was the ward I’d been in all along!  The nurse handed over to the ward nurse, and said that my blood pressure had risen quite a bit during the procedure, so they needed to keep an eye on it.  Argh, more blood pressure checks!

I was left to sleep for a bit as I slowly came round.  A nurse then came round to do the blood pressure test.  I admit I groaned, and said the test was hurting quite a bit, then of course after gritting my teeth the machine malfunctioned.  Just one more time, I was told.  Luckily it was back to normal, and as she took the cuff off she realised lots of red marks had come up all the way round (which are still there today!).  She gave me an apologetic pat.  I asked if she could take my cannula out as it was pulling quite a bit.  She took a look and said it was quite red, and that someone would do it before I left.  (Well, one would hope so!)

I was told to stay until lunch time, and then I would be discharged.  The nice nurse who admitted me then walked past and so I asked her about the cannula, and she said no problem and took it out.  She also checked my ‘wounds’ (just slightly larger than needle marks) and said she was happy with how they looked.

Still waiting opposite me was the older lady with the interpreter.  I heard a nurse say to her that her operation wasn’t going to be until mid-afternoon – yet she’d been admitted at 7am!  It seemed mean to make her wait so long, and I assume the NHS had paid extra for the interpreter when they could had admitted her at the 11am or 2pm admission times.  I noticed the little old lady chatted non-stop to her interpreter, which made me smile as I could just imagine in the 7+ hours the interpreter sat with her she got to hear her entire life story.

I left at 1:40pm, slept all the way home, slept all afternoon and very unusually for me – all night!

So all in all – it wasn’t nearly as bad as I dreaded.  The staff – particularly the nurses, were lovely.  There were lots of touches of kindness, like the nurse in the theatre distracting me from my nerves, the recovery nurse chatting to me as I came round and making sure I was warm, and the staff back on the ward who took care of me and offered me toast and regular drinks when I came round.  They all made it a much easier experience.  Also – the NHS really, really want to know if you have any allergies.

I’m in a lot of pain now which feels different to my usual pain.  I was warned I may flare up, particularly where the needle touches the bone – so I’ve no idea if it worked yet.  I think I need to wait for all of that to calm down over the next couple of days before I can tell if it helped.

A helpful image of a facet joint injection

An image of a facet joint injection

The final hope

The final hope

The day of seeing the Pain Clinic arrives.  I have been researching latest treatments and I find one that seems really promising in terms of pain relief – infusions.  I print off the latest studies to take with me.

I also take a list of medications/treatments tried and my diagnosis list.  My mind usually goes blank when I’m asked, so it’s helpful to have to hand.  My heart sinks a little when he asks about treatments I’ve tried – all the standard alternative and normal – physio/hydro etc and then follows up with ah, that’s a shame, you’ve tried everything I was going to suggest.

I want someone with flare!  Imagination!  Pain is unique and different for everyone, and if you can’t handle someone whose tried acupuncture already and found it unhelpful, then I’m going to struggle with that.  So I bring him back to my main reason for referral – facet joint injections.  My one last remaining hope.

But he, sadly, is not hopeful.  He explains that normally they’d help (normally, normally – I hate that work.  Normally surgery would work, normally treatment would work, but with you…) but because of my condition – my whole spine isn’t being held in place properly.  If he injected the main site of pain, it’s highly likely that immediately the sites above and below would become the problem instead, so I’d want injections there, and then immediately the next sites would go… and so on.

I then ask about the infusions and he tells me they don’t do them there, and even if they did they wouldn’t be likely to do them to people with Ehlers-Danlos Syndrome as there’s so few of us.  Right, so because it’s a highly undiagnosed condition – we deserve to be dismissed.

So my suggested treatment plan is upping my morphine patches until the highest dose possible.  If I’m still in pain, then they’d look at the injections.  Which will likely make me put on more weight.

The patches have added risks of fatigue, and messing with my hormones (i.e. increasing the acne I already have from using the patches.)

That’s it.  That’s my whole treatment plan.

I then explain how helpful I find massage, but I’m worrying about how I will afford it when I finish work at the end of March.  He agrees to write in my letter that I need massage as a treatment, which my GP should then be able to set up.

So, it seems this is my life.  Painkillers on top of painkillers.

Credit to Kurhan

Credit to Kurhan

How do you solve a problem like facet joint injections?

How do you solve a problem like facet joint injections?

The next step in my quest for facet joint injections, is my GP.   But this time when I tell her what I need, she hesitates.  Normally she would send me to the local Pain Clinic, but she’s aware my opinion of the clinic is somewhere around… mud.  And that’s being polite.

But there must be other pain clinics, right?

So she has a look on the system and it shows a few I can pick from.  There’s a hospital nearby with a reasonably good reputation, and she agrees to send me there.  She tells me she’d be really interested to know how I get on with them, as it would be great to have an alternative to send people to.  Translation: she has issues with the local pain clinic too, but can’t say so.

I’ve been seeing the pain clinic for some years now, and I have to say the treatments/suggestions they offer haven’t changed a bit.  The latest medications, research and techniques don’t seem to reach them, so I’ll be really interested to see what the new clinic has to say.

http://www.dreamstime.com/stock-photography-woman-lower-back-pain-image10394552

The Cons of Self-Management

The Cons of Self-Management

If you ask a doctor how to care for a chronic condition, or read their guidelines, or even go in hospital for a month on an intensive-pain management course (just to be specific) the themes running through them all, their little buzzword, is self-care.

I was reading the papers that have been created in the wake of the imminent closure of the PCTs by the doctors commissioning consortia whose priorities for the future are self-care, with aims to give patients the confidence to manage their conditions themselves.

To be fair, this may help with some conditions where perhaps a specific therapy or medication keeps symptoms at bay, but it gets a little more complicated when it comes to complex conditions where pain and fatigue are two pervading symptoms, amongst many others, because there is no single treatment. There isn’t even ten treatments they can say hand on heart would help everyone with chronic pain.

To be frank, it infuriates me to hear phrases such as ‘take control of your own treatment’ or ‘You have the power in your hands’ etc, etc, blah, blah, blah.

What they don’t tell you is that you have to. Self-care, that is. Because it will make up 99.9% of your overall treatment plan. Oh, it may be occasionally the NHS will think of something – physiotherapy injections, uhh… more physiotherapy, that is if you kick up enough fuss. Otherwise, it’s DIY all the way.

At the age of 15 I visited a Rheumatologist. He said I’d ‘grow out of it’. In the following years I was sent a couple of times for Physiotherapy, but it didn’t make the slightest bit of difference.  The NHS then gave up, and in desperation I saw chiropractors, osteopaths, acupuncturists and electro-acupuncturists. I tried the many sheets of exercises and stretches, swimming and pilates and a GP referral to the gym (that I paid for) which put me in bed for two weeks. I then started the ‘alternative’ stuff like the Alexander Technique to improve posture, the Bowen Technique which seemed weird and pointless. I saw Kinesiologists and had relaxation sessions. The only tiny bit of relief came from the many thousands of massage treatments I once again paid for.

massage

I’ve researched madly, kept up to date with papers on pain, studies on medication, and constantly visit the doctor with a new research paper in hand.

I even diagnosed myself – after years of consultants shrugging their shoulders at me, I kept searching and searching until I finally realised what was wrong with me, and then fought to see consultants in London who finally knew what they were talking about.

I now can only exist and function from a mixture of massage and adjustments, which takes the edge off – maybe 5-10% at best.  But it’s an important percentage.

In the ten years I’ve been madly trying anything and everything, the NHS gave me one set of facet joint injections in 2008. Some muscle injections in 2011. And six sessions of Hydrotherapy – but I had to fight for them all.

The thing I find infuriating is that no one tells you exactly what IS available. I had severe back problems for ten years before someone said to me there was a spine clinic in my town for people with long-term back issues. Do you really have to hit the ten year mark before they go crap, that is long term for a twenty-four year old?

When you get a diagnosis no one gives you a handbook and says here is what the Pain Clinic offer (if they deem you lucky enough to offer you anything at all) or let you know you can see Osteopaths and Chiropractors on the NHS. Or any other of the treatments they may have available. You have to wait until you stumble upon it yourself.

All they do is hand out painkillers (again, if you are lucky) and tell you self-care is the way it should be.

Sometimes I want to say you know what? I’ve self-cared. NHS – it’s your goddamn turn. I’m just too tired.